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Mental Health and Caregiving

In home family caregivers are often reminded to also care for themselves, but what might be overlooked is their mental health in addition to their physical well-being.

“There have been numerous studies that compare the caregiver population to the normal population, and caregivers have higher levels of depression,” said Lisa Gwyther, MSW, LCSW, Director of the Duke Aging Center Family Support Program and Associate Professor in the Department of Psychiatry at Duke University Medical Center in North Carolina. “They have higher levels of stress and stress-related illnesses, and it’s particularly true if you compare Alzheimer’s disease caregivers to caregivers of other diseases.”

The National Alliance on Mental Illness did a survey of caregivers in 2009, which “found that while almost one-half (48 percent) of caregivers for people with depression have been diagnosed with depression themselves, only about 25 percent were engaged in treatment at the time of the survey.”

The reason behind these statistics can be different for every family or circumstance, but Ms. Gwyther said there are some commonalities, especially when it comes to dementia home care. “Alzheimer’s is different because the person changes,” she said. “The person with the illness cannot be involved or even support what you’re trying to do so it’s very isolating.” (She notes that people will early stage dementia can and should be asked about their preferences; it is only in the later stages that they will become less aware and able to understand or support decisions regarding care.)

As a result, she said, the family caregiver does the thinking, remembering and takes on all the responsibilities of two people and this can lead to what caregivers call the “36-hour day.” “They are in a hyper-vigilant state and have a constant adrenaline rush,” Ms. Gwyther explained. Those most at risk for compromised physical and mental health are frail or older spousal caregivers.

What can be incredibly helpful is for these caregivers to find support—often from others who have or are dealing with similar issues. “A volunteer army of people sharing their experience is pretty powerful, said Ken Duckworth, Medical Director of The National Alliance on Mental Illness.

Families with a child who has a mental illness created NAMI’s “family-to-family” program, as well as other types of peer-to-peer support programs, which are incredibly successful, Mr. Duckworth said. “What’s interesting is that people going through the programs quickly become the teachers,” he said. “Then of course they see things through a different lens.”

Whether dealing with dementia, bipolar disorder, schizophrenia or some other mental illness, Mr. Duckworth said that people often feel alone and isolated. “It turns out you are not alone and it’s fairly common,” he said.

There are many more programs and ways for people to get help for better mental health. “It does help to know that there are successful treatments,” said Ms. Gwyther. This can include support groups, medication, psychiatric care, exercise, meditation, and more information can be found online. The Administration on Aging has local programs around on the country, the Alzheimer’s Association has resources to support caregivers, and Ms. Gwyther also refers people to the Family Caregiver Alliance for additional caregiver support resources.

“When we reduce depression in Alzheimer’s caregivers, we improve the quality of life and quality of care for both the person with the illness and the person caring for them,” she said.

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